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Help Stella Orpwood's battle with rare immune condition

  • Stella happy growing toddler

      15 December 2019
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    Merry Christmas to you and your family! We hope you have a wonderful holiday period spent with your loved ones.

    It's hard not to reflect on where we were this time last year. Stella had received her transplant on the 12th December and about now, she was fighting for her life as she had a nasty infection.

    This year we are are home, chasing around a very active, happy, strong-willed toddler. Counting down to our first family Christmas not in hospital.

    Stella is doing very well medically. We still administer weekly injections of antibodies, this luckily gives her some protection against measles. Unfortunately with ongoing cases of measles in NZ and neighbouring countries we are unable to come off this injection and begin the next stage of her treatment plan just yet, but we will get there.

    Stella is still tube fed, but has made some big leaps in learning how to eat recently.

    Overall things are looking really positive at the moment and we are happily slowly introducing Stella to more people and experiences.

    This week marks 50 years of the Newborn Metabolic Screening Program in New Zealand, Tanya attended an event at Parliament to celebrate the occasion. The Minister of Health gave a lovely speech and mentioned Stella.

    We are so lucky to have had Stella's condition picked up early through this screening, especially as screening for SCID was only introduced December 2017 - less than a year before Stella was born.

    The ministry of health commissioned this video to promote the success of newborn screening and it was an honour to share Stella's story and express how grateful we are.

    There are more stories about people with other conditions they screen for and a cool video about how the lab does the testing at this link:

    https://www.nsu.govt.nz/pregnancy-newborn-screening/newborn-metabolic-screening-programme-heel-prick-test/about-newborn/tell

    We wanted to thank you again for your generosity, having had time away from the chaos that was life in Starship we realise just how much we couldn't have got through without the financial support and kind words we received from yourself and others. So please take our most heartfelt thanks. Stay safe over the holidays.

    Love Justin, Tanya and Stella

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  • Stella happy and doing well

      20 June 2019
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    Here we are six months post transplant and Stella is turning ten months old next week.

    We've been home in Christchurch about three months now so thought we'd do a wee update. Things have been going really well so no news from us for the past few months has meant good news.

    We have only had one hospital admission since we got back to Christchurch, and have just been going in weekly for appointments, blood tests, check ups etc.

    Stella had surgery to have her central line removed after five months of it being in, the surgery went really well. Since getting the line out Stella has been doing amazingly, catching up on the big milestones like rolling and crawling and is now very mobile climbing up on boxes, pulling herself up on the wall and standing unaided for short periods. Scarily, she's probably not too far off walking.

    Medically Stella is doing so well. She has really impressed the immunology and transplant teams at Starship with her progress. Her immune cell counts are rising steadily and the medications she is on are being reduced weekly. We will continue giving her antibody injections at home weekly for some time yet.

    Stella is still in isolation at home, only seeing close family.

    Her NG feeding tube is still in as up until the past week or so she wouldn't have any liquid or food in her mouth but we are now making slow progress there and look forward to her one day eating by herself again.

    Stella is a vibrant little girl, full of smiles who loves to dance and laugh and has some serious sass. We fall in love with her more and more each day and are so overwhelmed by her ongoing resilience. If it weren't for her feeding tube you would never know what she's been through if you met her today.

    Being settled at home with Stella has given us time to reflect on all that's happened since we had Stella, especially our time in Starship. We talk often about how the generosity of so many people made it possible for the three of us to be there together and get through what truly was an awful time. We will be eternally grateful for the love and support we have felt at this time in our lives.

    Check out the gallery to see some recent photos of Stella at home.

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  • We're going home!

      20 February 2019
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    After 12 weeks in hospital we have great news! We've been discharged 🎉 we're staying at an apartment at Ronald McDonald House and it's so amazing to have all three of us under the same roof. We went for a drive and showed Stella the ocean for the first time. She's so stunned in the pram and car seat. The whole world must seem so overwhelming when you've only seen one room since you've been aware of your surroundings.

    The doctors are so happy with Stella's progress. We had a meeting with our consultants today and they've said we can go home next week! 🎉 It's so insane, we were prepared for so much longer up here. Because we kept Stella so well before we came up here they think she will be safer at home than at Ronald McDonald House.

    We'll still be in isolation at home, like we were before we came up here, but we'll be in our own home again!

    We have loads of meds to give and Stella still has mouth ulcers so we feed her mostly down her NG tube. She'll have an operation back in Chch to remove her central line soon and the Chch team will see her regularly for tests and to check her recovery is on track. This is just the best news, we're so so happy! Thanks again for all your love 💞

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  • Progress

      28 January 2019
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    It's been 7 weeks since our last update so here's a quick run down of what's been going on with Stella.

    The transplant itself went well without any issues. Unfortunately Stella got a blood infection from her central line. She spent a week really unwell with a high fever. Her body didn't have any cells to fight off the infection so relied on very strong antibiotics. That was a terrifying week for us where at times we didn't know what the outcome would be. Stella was well looked after by the intensive care team here at Starship.

    Stella came out the other side of the infection and the transplant started working with some cells starting to come in.

    We've spent the past few weeks just waiting for the really important immune cells to appear. We had a good test result come back yesterday showing that they are coming (just slowly). The doctors are happy with how the transplant is progressing so we just need to be patient.

    Stella currently has a mouthful of painful ulcers so we are trying to manage her pain and have gone back to feeding her down her NG tube.

    Stella is growing well and hitting all her developmental milestones she's still a happy baby except when we dont have her pain managed well. Her smiles melt our hearts and give us energy to keep going.

    Our wonderful friends ran an auction at Muscle Car Madness to help the fundraising efforts and we're so grateful to them, all the people that donated goods and of course the awesome people that purchased stuff and therefore donated to our Givealittle. This is a massive help to us. We've been able to stay together as a family throughout this due to all the kind people that have donated here.

    Thanks again for your ongoing support. We often hear that we are in people's thoughts, this means so much to have so many kind people in our lives.

    Love Justin and Tanya

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  • Chemo done

      11 December 2018
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    Time for a wee update at the end of a very hard week.

    Stella just finished 7 days of chemotherapy to prepare her for the transplant. It was a crap week with Stella needing a nasal gastric tube and morphine pump a week earlier than expected. She has had some reactions to different drugs and has been in a bit of pain preventing her from feeding at times. Unfortunately the real effects of the chemo aren't expected to hit until later this week.

    The stem cells have been harvested from the donor in Germany and are on their way here. The transplant goes ahead tomorrow, which is exciting and nerve wracking.

    As parents we're just doing our best and giving all the love and cuddles when we can, but it really sucks to see her going through this.

    Thank you for your ongoing support .

    Love Justin and Tanya

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  • We're at Starship!

      30 November 2018
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    We thought it would be a good time to update you on how Stella is doing.

    Stella travelled up to Starship on Monday on the flying doctor service.

    She is in good health and made it here without any viruses or infections. The virus we were hospitalized with in Christchurch turned out to be a false positive. Which was great news and meant we could proceed with the original donor.

    Stella had an operation to put a central line in on Tuesday which went really well.

    Chemo starts next Tuesday and the transplant is set for the following Wednesday. Unfortunately it is expected that Stella could get quite sick from Chemo but it is something that needs to be done to increase the chance of a successful transplant. We have trust in the doctors to manage Stella's symptoms so she isn't too uncomfortable or in pain.

    The Chemo will make her very vulnerable so we have to be extra diligent until her cells start coming back post transplant. All very scary but at the same time exciting as these are the steps to getting Stella well and back home.

    We expect to be in Starship Hospital for the next few months so are looking forward to our families coming to visit as they can.

    Thanks again for your support. A week in and we're realizing just how grateful for the emotional and financial support from everyone!

    We'll update again soon.

    Enjoy the holidays.

    Love Justin and Tanya

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    • 30/11/2018 by Barb

      Sending lots of love and healing thoughts to wee Stella, and love and big hugs to her Mummy and Daddy. Barb

  • Update on Stella

      28 October 2018
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    Justin and Tanya want to thank you from the bottom of their hearts for your donation.

    Stella was doing really well, keeping healthy until her transplant. Unfortunately on Friday some blood test results came back showing she has a virus which can be really bad in SCID patients. Fortunately this was picked up early and has not caused an infection.

    Stella is in the child cancer ward at Christchurch hospital in a positive pressure room recieving medication to fight the virus.

    A bone marrow donor had been selected but now that she has this virus a new donor will need to be chosen. Luckily Stella has 16,000 matches on the register so that shouldn't be too much of an issue.

    Starship have advised Justin and Tanya to plan to come up at the end of November. They will do a surgery to insert a central line and begin chemo in order to prepare for the transplant which needs to be done by the time Stella is 3 and a half months.

    Stella turns 9 weeks old today and is doing really well despite everything. She's a happy wee girl and loves when her Daddy talks in a really squeaky voice.

    Thanks again for your donation, we will keep you updated.

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